One single woman, one crazy city, and a chronic disease

July 11, 2008

Congratulations, you're hired!

Before my first rheumatologist appointment, I had a total of two doctors and a dentist, each of whom I saw once or twice a year. After my first rheumatologist appointment, I suddenly had six doctors, (plus the dentist) a physical therapist, multiple prescriptions, orders for xrays and enough blood work to keep a lab busy for a month.

As I found out, getting diagnosed with a disease, especially a chronic one, means that you have a new, full time job, like it or not. It doesn't matter if you already have a full time job and are swamped, and it doesn't matter if you'll actually be good at this job, either. Once you qualify, it's yours.

The benefits for this new job are lousy. There's no vacation (though you do get plenty of sick days, har har har), the hours are pretty vicious and include weekends, evenings and early mornings, and there are no retirement benefits . You can't even take a vacation from this job. But, worst of all, you not only don't get paid for it, it actually costs you.

After leaving my rheumatologist's office, where I had already scheduled a follow up appointment in six weeks time, I went immediately next door to the opthalmology department to make an appointment with a doctor there, then to have xrays of my chest made for when I went to the cardiologist about my heart murmur. When I got back to my office for my other full time job, I called to schedule the appointment with the cardiologist and the neurologist (for migraines). In successive weeks, I would also have to schedule two additional appointments with the opthalmologist (because of insurance, the three tests I had to have had to be done on three separate days.......), begin physical therapy sessions one to two times a week, and schedule an ekocardiogram, an MRI and more follow up appointments (and always, always, always, more blood work. At times, I feel more like a pin cushion than a person).

To say that I felt overwhelmed would be like saying that the Tour de France is a bit of a bike ride. (Side-note: go Team Columbia!! I heart George Hincapie!!) I felt completely snowed under and unprepared. Honestly, how the f*** was I going to do all of this? I already had a ridiculously busy life filled with meetings, traveling, going to performances, receptions, yoga and squeezing in time with my friends. Now I was going to have to fit in all these other appointments and become the manager of a medical team - my medical team, remembering when I was supposed to see whom, what had happened the last time, what I needed from which doctor, etc. (And trust me, YOU have to be the manager-no one else is going to do it for you, and no one else can be a better advocate for your own health. More on this later.)

Luckily, organization has never been my weak point, so after I got over my initial phase of mind-numbing denial and panic, I went out, bought a cute little notebook and an expandable mini-file folder system (because it's not like I have an office in my studio apartment) so I could begin keeping track of all my doctors, appointments, tests taken, medicines prescribed, blood pressure and other vitals, bills, insurance requests (and denials-blah), FSA forms and receipts.

For most of December, January and February, I had between two and four appointments a week, every week. And, at $30 a visit in copays, that was about $60-$120 every week, plus my monthly contribution of $50 to my insurance plan (I love how it is called a 'contribution,' as if I'm just overjoyed to 'voluntarily' offer up this part of my paycheck each month), and another $80/month in prescriptions and medical supplies directly related to my RA. That works out to about $500 a month before I even think about paying for other helpful things like yoga classes, reflexology or massage therapy. On my salary, this is a hugely significant and unplanned for expense.
(The sad thing is, some people have it so much worse than me. I heard on NPR yesterday morning that my age group is one of the fastest growing groups of uninsured in America, largely due in part to a foolish belief that post-grads and late twenty-somethings won't get sick and can therefore afford the risk, since most of us can't afford the insurance.) I'm fortunate in that my family is generous and currently in a position to chip in on these expenses when I need it, but many people are not, and over a person's lifetime, the costs really add up. You could say it's a bit of a conundrum. (Or impending financial disaster-take your pick.)

Thankfully, this new job is calming down a bit for now. I've gotten the hang of it, partly, so I'm not as overwhelmed, and it's not quite so demanding for the moment. My physical therapy is winding down (once you 'improve' enough, insurance gives you the boot, which if I had an injury that would heal and go away for good, would make sense. What part of chronic do insurance people not understand???), so I only have one more appointment to go (which means it's bye, bye to Marco...) The initial battery of tests is over, so now it's mostly about seeing my rheumatologist every six to eight weeks, all my other doctors every six months to a year, and managing prescription refill schedules (I swear I am always dropping one off or picking one up every time I turn around), insurance and FSA paperwork and staying on top of my preventative care - yoga, bodywork and things like that.

I'm hoping I'm not up for any type of promotion any time soon. I am, for once, perfectly content (and would prefer) not to move up in this job. I'm hoping if I play my cards right, I can stay in this lower management position for the rest of my days and not attract too much attention from the higher-ups. And, who knows but with all the scientific and medical research being done, maybe one day in the future, I might actually get fired!